The Life of a Free Range Aspie

Autism, Aspergers, PDD, PDDNOS are all conditions that exist on the Autistic Spectrum. All are classed as "disorders" in the DSMIV. That means they represent a billing code - and the world is filled with "cures" and advocates of "cures" for the whole range.

Inasmuch as there seems to be no serious consensus on what causes autism, or whether, in isolation, it's a problem outside of the extreme, (and those extremes do have protocols associated with them), the faint aroma of bubbling snake oil ought to be tickling your sinuses at this moment.

Some of us who are unquestionably on the spectrum do not see it as a "disorder" so much as a distinct difference with inherent communications difficulties - at least, when it's not in it's extreme forms. In many ways, it's social and personal impacts are similar to more obvious things, like blindness or deafness. And, as is well understood, any sensory deficit brings with it compensations that are arguably advantageous if the differently abled person finds a niche where they can bring that enhanced ability to bear.

(You know, I believe that's the first time I've ever used that PC phrase in a literally meaningful way.)

But I will say that "differently abled" is a much more useful way of thinking about aspergers, autism, and indeed almost all "disabilities." For the most point, the fact that such a person is unable to cope in the way almost everyone would requires they develop abilities that are comparatively rare by definition. And that - especially when those abilities are guided and developed with that idea in mind - is a valuable thing.

Unfortunately, groups like "Autism Speaks" are unwilling to comprehend that. Indeed, they are unwilling to even admit that autistics capable of communicating their preference to not be spoken for exist. As for aspies - well, there's nothing wrong with us that a few months in a skinner box couldn't fix. It's merely demoniacally inspired willfulness. It should not be particularly surprising that Autism Speaks and allied organizations are composed almost entirely of social conservatives; people for whom "not fitting in" is considered a crime of willful disobedience, or a disability of such crippling extent that any "cure" up to and including lobotomy or abortion is better than the "disease."

If you have stumbled across this almost unavoidable (and odious) viewpoint in a search for autism information, you might wish to trundle on over to autistics.org for the autie point of view, or you can drop by wampi.org for a mother's perspective on successfully raising a "free range aspie," without the "benefit" of most interventions and no aversives at all.

Todd is now in high school - and not a particularly aspie-aware one, despite our best efforts. And yet, while being more aspie than I am in many ways, he has friends, he's well liked, he's respected by his peers and his teachers, and this is all despite behavioral issues that one could easily label as "annoying."

Charitably.

The fact is, when everyone involved knows what's going on, it's a lot easier to avoid tripping the xenophobe circuits that lurk in our hindbrains. Our reptilian bits are convinced that what is concealed is potentially deadly dangerous - and there's been nothing in my conscious history that could argue with that first presumption all that effectively. Once we know that an annoyance is merely that - an inevitable and understandable consequence of a person being who they are, it's a lot easier on everyone involved. Particularly the aspie or autie who is no more immune to seeing themselves as being dangerously different than anyone else.

But of course, before you can be upfront about what you are, you have to understand it yourself. Alas, I had no words for what I was before my early forties - while Todd's mom knew from very very early on.

And, I should add with a proud grin, didn't much care. Nor did his dad (not I) - I will say with equally proud smugness. As a result, he's had appropriate accommodations his entire life - with no expectations whatsoever along the line of "fitting in to the world around him." That's an excellent thing, both philosophically and practically - if there's one thing a person on the AS spectrum is unlikely to be able to do effectively, it's "fit in" - and efforts in that direction will trigger pink monkey syndrome.

Trust me on that - my entire primary and secondary education was an exercise in tossing a pink monkey into the primate cage to see if he'll be able to pass THIS time.

It's hard on the pink monkey - and trust me when I tell you, it can end up with rather scuffed "normal" chimplets and primate attendants.

Of course, living in an area with larger catchment is a great thing; Todd was lucky in that he nearly immediately found his pink monkey posse and we-all just gutted it out as he geeked it up with his strange little friends.

I never, EVER want to hear the word "Pokemon" again.

And at the same time, I realized that with a shift in time, there I was geeking it up with MY strange little friends with the equally baffling Dungeons and Dragons - a bootleg first edition, actually. No, paperback.

Yeah, THAT old. Hell, I even wrote supplements. Todd's obsession never reached those heights - in regard to THAT topic. But the capacity will serve him well, since he didn't have parents who swatted him every time he wandered off into his head.

And yet, if you are concerned that you are doing the wrong thing as a parent, allow me to reassure you to a degree. I've come to the conclusion that in regard to my own personal configuration and nature, I had the worst parents possible. My mother was neurotic to the point of insanity (borderline, perhaps) and if my father was not a clinical sociopath - it was probably due to him being barely clever enough to avoid any significant attention.

So, aside from the obvious, the problem was that I could never rely on my parents to do the right thing, or even the predictable wrong thing. All I knew was that to bring an "instance" to their attention would raise it to the level of an outright "situation."

But nonetheless I managed to survive and find a niche. I am now fifty and content with my life - a fact that would probably baffle the hell out of an impartial neurotypical, for I have nothing of significance that most people would equate with proof of success. Me, I have all the proof I need.

I look at most of the things I'm supposed to want as "crap I have to dust." It's amazing how starkly different your values are if none of them involve impressing other people and expanding your social network. It's not surprising that many neurotypicals still see us as alien and therefore dangerous; there's absolutely nothing they think of as prime motivators that strike most aspies as being good things. Social dominance. Control of large, complex organizations. Having a full roladex. "Winning."

Todd LOVED t-ball until he discovered that winning meant someone else had to lose. Then he was done. He loved martial arts - as long as it wasn't a "sport." And he's one hell of a good fencer in particular and loves swordplay in general - but not at all interested in scored matches.

Like me, he's only interested in becoming better than he was last week. And like me, at some point, having had to come up for air, he will run head on into the fact that he's objectively as good as anyone else doing what he does - possibly better - and have no freaking idea what to do about it.

Fortunately, it appears that there's already a profession intended to deal with this matter.

We call them "agents." And pragmatically, that's the most significant accommodation needed for any aspie, whether they are literal agents, or simply family, spouses and partners that act in that way.

Pick any aspie of significance - like, say Einstein - and you will find that there was a person who is steering them toward the best applications of what they are, and steering others who need those talents toward them. I would not be horribly surprised to find that a large percentage of those persons have as rare a wetware configuration as our own.

But even left to our own devices, and having to cope with very nearly the worst possible combination of circumstances, I note that as we age, we tend to settle down and, as I said, find our niches. With help, we can probably find more impressive or lucrative niches - but I wonder to what extent that actually matters to us as aspies. It probably matters more to the people to whom we matter, frankly.

I think of myself as well-tested proof of concept.

My writing is distinctly aspie-style communication - something you may come to recognize as you go from place to place, reading what other aspies and auties have to say about themselves and their lives. I have little or no motivation to create other than the act of creation, whether it is writing or artwork. I love electronic media because it eliminates most of the out-of -pocket expense of being an artist or writer.

I've only lately really grasped that sometimes, in order for the effort to be meaningful, there has to be some objective proof of utility. Or, at least, that's my feeling. Lord knows, within the art world, I could point to exceptions. Nonetheless, those exceptions seem to get a lot of attention and attract commissions, so perhaps it's merely a different expression of my view.

Had I had different advantages - such as the upbringing Todd enjoys - I would very probably be ensconced in some comfortable tweed-lined academic niche. I'm not at all sure that I'd be more content than I am, and I'd only be as content as I am if I had people to cope with the things I could not cope with well or at all.

But certainly I would be of greater utility to more people and be making a broader, more lasting and I would hope positive impact on society.

On the other hand, with exactly the wrong set of circumstances - I could have been Karl Rove or Condi Rice. So all things being equal, I'll settle for the angels I have. I was on my way to achieving a niche of that sort when a parental idiocy sent me into a state of clinical depression that left me rather behind the curve.

But seeing as that diversion left me with an expertise and understandings I hope to ghu no more than a handful of other people can match, I am content - for I still have decades to apply it, goddess willing and the sky don't fall.

I think it's reasonable to state that whatever I think about the views parents in some factions of the autism awareness movement, generally parents wish their children to be as happy and as successful as they. And I'm here to say that no matter how badly you think you have screwed that up in your well-meaning way, that's probably still possible.

Whether you understand why they are as happy as they are, and think of themselves as successes when you don't is quite beside the point, really.

But of course it will be ever so much easier on everyone if you accept them for what they are. It could be worse, after all.

You could have a charismatic 89 IQ high-school linebacker with abnormally high testosterone levels and an addictive personality, doomed to a career in door to door appliance sales.

Frankly, I'd take Todd over even an average teenager. Some times Todd screws up, of course, like any other inexperienced human being. But the thing that relieves me is that he always errs on the safe side; he doen't take foolish risks and he does not seek out the company of people who do. I don't think I can think of an instance of him making the same mistake twice. I get to sleep at night, knowing for near certainty that there will be no emergency in his life that cannot wait for daylight - and it will almost certainly be deliberately caused by someone else.

Usually someone who thinks they "know better" and have a right to impose that vision upon us.

On such occasions, with such people. I find myself having no difficulty maintaining eye contact and smiling. None whatsoever. Oddly enough, they find it a lot less reassuring than all their theorizing says it ought to be.

Great Parenting makes a great difference

While the Refrigerator Mother hypothesis has been discredited as a cause of autism, it was seemingly never addressed as a symptom of a reaction to an autistic child. Bluntly, while "refrigerator parents" do not cause autism, they do cause tremendous disability and damage that persists for a lifetime.

In one critical respect, autistic children are no different than other children; we are keenly aware of our parents and how they feel about us.

For good or ill.

The video here is a record of advocacy from a 9 year old autistic young man who uses a keyboard to do most of his verbal communication. He is identified as "D" here.

He was part of a panel hosted by an autism organization. The audience submitted written questions to all the panel members, some of whom were diagnosed with Asperger's syndrome and some with autistic disorder (Kanner autism, core autism, whatever folks are calling it this week).

D's answers were intriguing, at times puckish and inciting as well as insightful. (Autism Diva is trying to follow in D's charming footsteps and use more erudite and scintillating parlance.) D's answers are recorded here on this video made by D.

We are certainly aware if we are felt to be a cross to bear instead of a treasure and a joy. We are also keenly aware when love is conditional upon behaving as if we were not ourselves, conditional on telling them what they wish to hear rather than what is true and real for us. We especially learn that our perceptions of how others treat us is unwelcome. Wait, perhaps that was just me. But when I came home, crying and bleeding with various injuries - the first thing I was always asked was what I had done to deserve it.

I have no idea what my diagnosis as a child was - my parents were very secretive about that - but I'm sure there were several. Probably one was "childhood schizophrenia," given the era. But I do know that I had my head candled many, many times and the results were always, obviously and clearly, my fault.

This is absurd, of course, and even then I was reasonably well aware that my parents were neither reasonable nor rational on the subject that was me. But the net result was that my parents completely overlooked everything about me that was potentially valuable while focusing intently on all my manifold "flaws," which were always related to being insufficiently like the other children they kept trying to force upon me - at any price.

Meanwhile, they went to great lengths to sabotage my interests and to interrupt my perseverations; communicating to me that if I was interested, it was therefore inherently valueless. Had a "normal" child shown the same abilities and interests as I, they would have been turning handsprings. Moreover, I showed no tendency whatsoever to engage in "normal" adolescent stupidities, such as drinking, compulsive risk-taking or engaging in pointless athletic mating display contests. (That was my perspective at the time. Now I rather regret missing a small portion of my share of the above; I do wish someone had bothered to explain the point to it all.)

While this gave them much less to worry about in a real sense, my mother at least found a great deal to fuss about in the realms of the unreal and untrue, while managing to overlook almost everything she could have usefully addressed, such as abuse - mental and physical - by schoolmates and teachers that has left me with permanent and surely apparent emotional scars.

I was frequently told that what happened to me was my fault for "not fitting in," the delusion compounded by the assumption that I would have been allowed to fit in under any circumstance. Alas, when a child (or adult) is identified as a legitimate target, nothing that person can do to change their status within that social matrix. They must either escape that matrix, or be destroyed by it.

It is not surprising that adolescents with AS spectrum issues suicide at a rate that has been cited as being as high as thirty percent. It has nothing to do with autism, per se; it has to do with abuse, rejection, humiliation and depression resulting from repeated failures to fit in with the antinomy of being told by everything around them that they would be loved, accepted and valued if they did fit in.

The tragedy is that the autistic mind is adapted to function best apart from and outside of a social dominance hierarchy. So much of the "best advice" is 180 degrees incorrect, starting with the presumpton that a lack of a broad social network is the result of, or the cause of, emotional deficits and damage.

In fact, autistics need a small number of intensely dependable and deep relationships; those outside of that circle will tend to be activity-based relationships rather than emotional ones.

It's a profound difference, one that seems very difficult for Neurotypicals to understand - but it is nonetheless true of AS spectrum people to a broad degree, to the point that it seems fall within the range of "autistic-normal."

I've often wondered what I'd be like had I been raised by sane parents, or, frankly, even wolves.

D's example; a nine-year old boy who is valued for what he is, rather than devalued for what he is not tells me that's all the "cure" that we autistics require.



tag: autism awareness, cure autism now, neurodiversity, posactive, pro-autistic, aspie, aspergers, AS, autistic spectrum, autistic parenting

Give a Clue this Christmas!

My Latest Autism Designs and what they mean.

People who are neurotypical tend to think in boxes. One problem with being on the Autistic Spectrum is that you tend to not think in boxes. As far as I can tell, our thought process is highly relational. We tend to not even SEE the boxes and we don't think in a binary way at all.

A great number of problems come from the inability to understand that different people can have starkly different ways of understanding the world around them.

We tend to assume that people who came up with a functional solution for a problem came to it in the same way; indeed, by way of the same initial perceptions. Autistics and Aspies are as guilty of this as anyone; indeed, it's been studied within the AS population. The reason it's not been studied within the NT population is simple; in the case of NT's, the assumption that another person has a thought process that works like yours does is statistically likely to be correct.

So, when an autistic person makes this unwarranted assumption, it's called "mind blindness" and the autistic is gently handed a clue in the form of "social stories." When an NT does it, it's in the form of an organization called "Cure Autism Now."

If "autistic thought" were not valuable, there would not be such a roster of famous thinkers, such as Einstein and Newton now thought to have been probably autistic to some degree. By the same token, it should be a profound clue that there are courses to teach neurotypicals to "think outside of the box," and almost all higher education is aimed at rooting out simplistic, either-or thinking and to over-ride fear and submission responses when you have to communicate about or defend your work.

The ability to think and function outside of the box is an asset of significant value; recognising that is especially important if you are planning to "do something for autistics." Their ability to function in 'in an appropriate way' is limited, but that does not imply their ability to function, given an appropriate context is as limited as it appears. The trick is to find that context; and in that context they will not have so much difficulty "being appropriate."

There's no area where this insight is more critical than in regards to the parents of autistics themselves.

Make no mistake; autism can be a crippling condition, and it's made worse by being a condition where you absolutely must depend upon others to accommodate your needs and accept limitations that those without the condition cannot easily see or understand. But even the most obviously disabled "autist" is as severely affected by presumptions of how their disability affects them and even more by refusal of others to accept our word for the accommodations we need.

This following paragraph is emblematic of the crippling parental fears that the 800-lb gorilla of the pro-cure movement exploits for funding and validation:

You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely. - FAQs about Autism: Cure Autism Now

Those of us who object to such fear, panic and the pervasive bigotry that exists with in the pro-cure movement - as well as it's seemingly obvious ethical deficits are pretty soundly attacked, with all kinds of terrible motives assigned us. (Theory of Mind, eh?)

A great deal of the work on the support groups that accept AS persons as contributors - something of a rarity - is to get non-AS people to accept that our "inability to cultivate friendships" is not a crippling condition to us. Once we have our one or two friends - friends as geeky and weird as us, generally speaking, we are done. My personal limit is two, and what NT's call "friendships," I now interpret as "Acquaintances." Yes, of course that has profound effects in terms of my ability to sustain a social network, and that has cost me many opportunities; indeed even jobs. I try and work things so that one of my two has the social skills I lack and the willingness to use them on my behalf.


Unfortunately, there is a lot of very bad advice out there and some very bizarre ideas as to what will be helpful to people such as I, who are on the spectrum and who are nonetheless potentially articulate and intelligent beings. Mostly this revolves around the idea that a bad job of conforming to the expectations of others is superior to a good job of being me. Here's Lennie Schafer on the topic of "fake autistics" like me.

(What about "high functioning autism" and how does that fit in? Simply put, it doesn't fit in anywhere. High functioning autism is not clinically defined and is not in the DSM-IV, and for good reason. High functioning autism is an oxymoron. If one meets the criteria for a diagnosis of autism, by definition one cannot be high-functioning. It would be as silly as the term sharp-eyed blindness.) (1)

So why would a handful of people, amongst a few others, who apparently are for the most part Aspergers, if anything, want to identify themselves autistic? Perhaps because autism is a profound disability and Aspergers is a disorder that is mostly not. Autism thus carries more moral weight than Aspergers and therefore has more moral clout for self-esteem building political and social agendas. "We autistics don't want to be cured" carries much more punch than "We Aspergers don't want to be cured", especially given the reality that there is no movement anywhere that seeks to "cure" those with Aspergers into being anything else.(2)

Aspergers-labeled alone, they would be ignored by the press and would be denied the juicy sense of empowerment that would come with a high-profile "oppressed minority" movement article like the one in the liberal New York Times. (3) (4)

The New York Times reporter failed to do a journalist's most basic homework. She failed to check the credentials of those doing the complaining, despite my urging. Anyone can call themselves autistic and write cranky letters to the editor. So how does someone determine if a person is truly autistic,or is an autism imposter with Aspergers? Ask to see their diagnosis. If someone claims to have autism for purposes of making some political statement, ask them to prove it. In any of the correspondence I have had with the autism "imposters", not one has ever supplied such documentation. (5) Of course, it is highly unlikely to ever see it. The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic.(6) Apparently more than one big city newspaper has failed to see through this deception, so eager are they to get an unusual victim story into print. Can we afford to allow the interests of our autistic children and everyone else "on the spectrum" to be pushed out of the public eye and displaced by a handful of imposters crying a contrived victimhood? Who speaks for autism? Not this bunch.

Note that he, and those like him don't like being quoted, even under "fair use" constraints.

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Of course, if I committed so many foolish rhetorical errors in public, I'd prefer not to be used as a hideous example either.

1. Argument from Authority. Of course, the process of determining what goes into the DSM-IV is pure and objective science .
2. Aspergers is, in fact an autistic spectrum disorder and has quite a range of effects. As a step-parent of a diagnosed Aspie, I'm very aware of the fact that there are very significant issues involved. They are not so inconvenient to US, as parents. They are going to affect HIM quite significantly unless we find some adaptive strategies that work for him.
3. As opposed to the entirely legitimate empowerment that comes from suffering the hideous, horrendous burden that is Autism.
4. Of course, it's a liberal thing to be concerned about the civil rights of children being abused and neglected for the sake of the convenience and social comfort of their conservative parents. This is the root host for "Autism, A Debilitating Disease, not a Culture," a page that links to both Free Republic and Free Dominion, while telling Canadians they a vaccilating, unpatriotic fools for not joining the "Coalition of the Willing." Snark aside, the fact that this site, is associated with Authoritarian Right Wingers explains a lot about the entire, very authoritarian "curebie" movement.
5. For myself, I want to see Lennie's MENSA results, his HIV status and full financials proving he's not unduly profiting from his activism before I deign to speak with him. I suspect he's unworthy of my attention, but if he proves otherwise, I will of course listen.
   
6. Factually untrue.

Unpuzzled is my most militant anti-curebie design, with the slogan, "help find a clue."

I know, it's rude and confrontational, but I've found that sometimes you need to swat people with a clue-by-four in order to startle them enough so they actually listen.

Those "seeking a cure" tend to ignore everything from those of us who ARE on the spectrum because it doesn't fit into to their mindsets, just as they reject "inappropriate" responses to communications from their autie and aspie children.

This is especially true of issues about communication style, reasonable accommodation and most importantly, the concept that a difference need not be AS disabling as it seems from an "NT" perspective. And, speaking as someone who's gone round and round on this at various times and under various circumstances, those who most boldly wave the "puzzle ribbon" seem at times to be making a point of their puzzlement, and their inability to understand to be the issue of auties and aspies.

See point above about how many friends and relationships an autie or aspie needs in an emotional sense. We do not absolutely require a relationship with the biological parental units. It's a nice thing to have, but we cannot and some quantity of will not be as easily coerced by family emotional ties as neurotypicals can be. This is not just because we have a "faulty" connection between emotions and reasoning. Our reasoning is not emotional, and our emotional responses seem to be quite different - across the board. Put two aspies in the same room and they will communicate quite well indeed - but their body language, topic choices and intuitive negotiations of "status" will be starkly different - and one of the greatest differences is the relative lack of huge tooth-bearing grins with full eye-contact.

To an aspie, to most sensible primates and all cats I've ever met, bare teeth and a full-on gaze is, at the very least, a statement of territorial or situational dominance, inviting a ritual contest of wills to determine who will be in charge and who will submit. Your typical aspie doesn't wish to play that game, having no need or real desire to join your pack, so if you do see them bare their teeth - it's probably in the context of a genuine, non-ritualized warning that Bad Things Will Suddenly Occur If You Do Not Go Away NOW.

What part of "Agggh! [flap flap flap] [throw object] LEAVE ME ALONE" is unclear to you people?

The "Unsmily" design honors the "aspie smile," a neutral expression that essentially means "hailing frequencies open." That look of slightly blank attention is a sign that an aspie or autistic is willing to let you talk at them for a while. Indeed, oft-times we are listening so hard that we are not thinking about what we will say next.

No pointless social noises please! Talk about something that is both objectively important and something within the realm of my interest and ability to have an opinion on. Make a full statement, then shut up and let me talk at YOU for a while. Then it's your turn.

Appalling, isn't it?

Well, that is the way aspies and auties communicate best - asynchronously. The full give and take of an NT conversation is difficult for us, and those of us that can manage it are doing it because we realize that style of communication is important to our NT friends all out of proportion to anything actually communicated. Mostly we grunt and make what experience has taught us to be socially appropriate noises at the expected times.

We are quite unlikely to put up with attempts to get us to conform to your expectations of what people like you should be. We are not 'like you,' and while we do very clearly appreciate that you have social advantages we do not, and we all understand that any parent would wish their child to have every possible advantage - we also know that many of those "advantages" come with a price. Some of those prices are ones we cannot pay - and for many of us, compromising who we are or being less than honest about what we know to be true is a price we will not pay - no matter how politically incorrect it may be to point out that the emperor has no clue.